Dilemma - don't know what I should do

[call me jaded]

I have been advised by 16 y/o DS's school to get him a SW, otherwise the transition to adult services will be 'a nightmare' (in their words) so we had a core assessment done some while ago.

 

I was given some 5 hours Direct payments which I haven't used as the person who used to take my son out is studying in America now and I've been too lazy to find someone, check them out and train them to understand him. Not desperate to have a break from him as he's very easy at home and DH and grandma do their bit. Also we got stuck in Spain for an extra week due to volcanic ash so I've actually had a two week break this year with another week where he goes away in October. My needs are being met.

 

We went back to panel to say direct payments aren't working and to take them back. I asked for tea visits instead, where DS would go to local respite unit after school and then come home afterwards. It's more about socialisation for him than anything else.

 

Today I got a phone call to say we'd been turned down for that, but I'd been offered overnight stays at the respite unit at weekends plus five hours a week 2 to 1 homecare. He was 16 in May, these services will stop overnight at 18. The children's respite unit is excellent, the adult one is awful.

 

I really don't know whether to take what's on offer - it's far more than I asked for and I feel it's being pushed on me because there isn't anything else suitable. He went to the respite unit once for three hours whilst I went to a meeting that the head of service really needed me at. It was a disaster as despite all instructions to the contrary they tried to interact with him and he got annoyed. The fact that they've offered 2 to 1 without blinking makes me feel nervous.

 

His school has him as 1 to 1 because of care needs. They leave the national curriculm behind in September and it will be all about going out in the community, so he will be having opportunities for socialisation there, plus there is now (thanks to Aiming High) a youth club that he can access with 1 to 1 support. So I'm really wondering if I'm going to land myself in a whole load of bother and both of us end up as pawns of the system when neither of us are in real need (touch wood). Maybe I should decline services and spend his next three years at college looking for the right support for when that ends.

 

First time in a long time that I haven't known where I'm going. I'm thinking to turn it all down. What are the pitfalls?

[Karen A]

<'> <'> <'>

Oh dear.

I have no idea at all but can see it is a huge dilema.

Karen.

[MelowMeldrew]

I have been advised by 16 y/o DS's school to get him a SW, otherwise the transition to adult services will be 'a nightmare' (in their words) so we had a core assessment done some while ago.

 

I was given some 5 hours Direct payments which I haven't used as the person who used to take my son out is studying in America now and I've been too lazy to find someone, check them out and train them to understand him. Not desperate to have a break from him as he's very easy at home and DH and grandma do their bit. Also we got stuck in Spain for an extra week due to volcanic ash so I've actually had a two week break this year with another week where he goes away in October. My needs are being met.

 

We went back to panel to say direct payments aren't working and to take them back. I asked for tea visits instead, where DS would go to local respite unit after school and then come home afterwards. It's more about socialisation for him than anything else.

 

Today I got a phone call to say we'd been turned down for that, but I'd been offered overnight stays at the respite unit at weekends plus five hours a week 2 to 1 homecare. He was 16 in May, these services will stop overnight at 18. The children's respite unit is excellent, the adult one is awful.

 

I really don't know whether to take what's on offer - it's far more than I asked for and I feel it's being pushed on me because there isn't anything else suitable. He went to the respite unit once for three hours whilst I went to a meeting that the head of service really needed me at. It was a disaster as despite all instructions to the contrary they tried to interact with him and he got annoyed. The fact that they've offered 2 to 1 without blinking makes me feel nervous.

 

His school has him as 1 to 1 because of care needs. They leave the national curriculm behind in September and it will be all about going out in the community, so he will be having opportunities for socialisation there, plus there is now (thanks to Aiming High) a youth club that he can access with 1 to 1 support. So I'm really wondering if I'm going to land myself in a whole load of bother and both of us end up as pawns of the system when neither of us are in real need (touch wood). Maybe I should decline services and spend his next three years at college looking for the right support for when that ends.

 

First time in a long time that I haven't known where I'm going. I'm thinking to turn it all down. What are the pitfalls?

 

I got my son a SW day one, they did nothing until he was 14 yrs old ! I am totally dreading the 16yr old thing, College and the rest of it, because my area has no backup systems for autistics and we have never had respite. I do not believe college is a valid option and said so. AS I write my area had no system really set up for teen to adult autistics. It is all make do and hope for the best approach which isn't really encouraging. A recent meeting all agreed socialising and attempting integration etc is now an non-option, inclusive sports/play have been dropped the last 14 months, and only then because my son found the voice to say he wanted nothing at all to do with it. We had been sending him to his personal room 101 apparently, inclusion ! That is why they say there is not much point in providing people to try. Just where DO you go from there ? So long as he has Mum/Dad and people stay well clear of him and he does his own thing, it's not problem to him. I'm just awaiting some bright spark from the equality and access area to say he MUST socialise and attempt inclusion, aint got it have they ? An 'disability sport' event saw my son shouting "I don't want to be with these people !" (Didn't go down very well!).

[baddad]

If you don't feel you need the respite services and you are more concerned for him to get socialisation opportunities i'd be inclined to try and 'rewind' and get the direct payment funds. It's a bit of a bummer, because the onus is back on you to do the leg work, but at least that way you can tailor the options to what he needs/you think he needs rather than the hobson's choice you've been offered so far. I'm not very knowledgable about direct payments and how they work etc, but perhaps you could find someone who could help him combine 'social' and wider life skills and get a bit of a jump on the community skill he'll be working on at school in the near future?

 

Whatever you decide, very best with it

 

L&P

 

BD

[Suze]

I would try and base your descision on what you think will happen in the long term, do you see your son at college for example, or having some kind of job?, will he live independently and be able to manage his own needs like cooking, shopping etc.Knowing some sort of answer to these questions will maybe sway you towards the resources that will be easier to carry on and work with post college and into adult life.Good luck with it, my boy is currently going into yr 11 and we are looking at college placements for him , its very scary , suzex

[call me jaded]

Well in my mind I have him living at home until my youngest is 18 and then going off to some kind of supported living. He'll be 28 then and I won't be far off drawing a pension.

 

He's non verbal, SLD, has no self care skills whatsoever, needs me to change TV channels, dress him, but is well-known in school for getting his needs known and met, laughs appropriately at even some of my most obscure jokes, is patently infatuated with a tall blonde teacher.

 

I'm thinking of getting creative with the 2 to 1. What exactly I'm not sure but something outdoors. There is a conoeing club with an huge adapted canoe that goes on the Thames. Right next to the lifeboat station

[JsMum]

If it is supported living services that you could see using in the long term I would concentrate on what services are available for that, they may do transition work, as your happy to care for him until his nearly 30s then I would look at social/recreational activities he can participate in along side living with you with outside agencies.

 

It wouldnt of been given to you if they didnt think there was a need, its taken me a whole year to get respite in the holidays for my son but mine is because of respite and social and recreation needs so it maybe different for you but still they have offered provision on his needs, so they must feel he requires the social care needs, and the fact school also give him 1-1 support it might be because they wanted to reflect this in other services he recieves.

 

What about contact National Autistic Society to look at your options further, they may also know more Adult repsite provision that is more exceptable, if your unhappy with the Adult respite then Im sure other parents of Adult Special needs will also so I would research to see what other provisions are available including independant and private services.

 

I would say that having a foot in the door now for services will defo help your son for the future services and provisions he is going to require once he has transferred into supported living.

 

JsMumx

[lisac]

Well you could do whatever sits comfortably with you . Or, you could take it all , give it a chance, if it doesnt work out you can change your mind and at least you tried . I would do that , something positive might be lurking in there , but i know what you are saying about the system.

[Lynden]

I agree with Baddad - I'd be tempted to see if you could get the direct payments option back. We have direct payments for L and I think it's fantastic. It gives us so much flexibility that community respite wouldn't. During term time she takes L to his after school club which allows me to take my daughter to ballet. In the holidays, what we tend to do is have his respite carer come out with us so we have an extra pair of hands on days out. So really, we don't use our direct payment so much for respite for us from him, as opportunities for him and for us to go out as a family.

 

We do save up hours every so often and she will do overnight care for us as he is an awful sleeper so having a night off, even just twice a year, makes a big difference.

 

Lynne x

[MelowMeldrew]

I agree with Baddad - I'd be tempted to see if you could get the direct payments option back. We have direct payments for L and I think it's fantastic. It gives us so much flexibility that community respite wouldn't. During term time she takes L to his after school club which allows me to take my daughter to ballet. In the holidays, what we tend to do is have his respite carer come out with us so we have an extra pair of hands on days out. So really, we don't use our direct payment so much for respite for us from him, as opportunities for him and for us to go out as a family.

 

We do save up hours every so often and she will do overnight care for us as he is an awful sleeper so having a night off, even just twice a year, makes a big difference.

 

Lynne x

 

Ah respite ! how lovely that must be lol (Not that we have ever had it but...). School clubs ? it is clear some areas are spoilt for options and others with none at all. Our school is 40 miles away hardly practical even IF they operated a club which they don't. I also need total convincing college is worth him turning up for. I'd prefer he stayed at his present school and slept there 4 days a week to help him with skills we are struggling with, this would offer us respite, and offer him support in an area he is comfortable with, but my local LEA is determined to throw him to the mainstream and inclusive wolves to prove a point. I have the NAS coming here for 2 weeks a few hours a day to look and assess, perhaps to suggest ways we might not have used yet to help the lad manage himself. But it all looks to him and me, like he will always need help regardless what we do. He spends far too much time at home not doing much and we have run out of ideas frankly to keep him amused or distracted from his obsessions. It's a recipe for more meltdowns like we had today, you can't keep an active teen running around in circles at home for long and not feel they will get frustrated by that. I think my lad and us need a break ! There is none offered or ongoing, you just do what you can and hope don't you ?

[call me jaded]

We use Activenture MM. Maybe there's something similar near you? I found it by searching the NAS site for holidays. SS now pay for it, though we saved up DLA for it the first time.

 

Because we are usually at least three adults when we go out and about we can do it quite successfully. I can manage four children on my own if we pick where we go carefully (never shopping, loads of picnics), so as I said I'm too lazy to find someone to pay with DP, but do feel quite strongly that a 16 y/o shouldn't always be with his parents.

 

Having spoken with my friend she said it took seven months for her support to start, so it looks as though I have stacks of time to think about this and get something lined up. I'm definitely not going to do the overnights.

[MelowMeldrew]

We use Activenture MM. Maybe there's something similar near you? I found it by searching the NAS site for holidays. SS now pay for it, though we saved up DLA for it the first time.

 

Because we are usually at least three adults when we go out and about we can do it quite successfully. I can manage four children on my own if we pick where we go carefully (never shopping, loads of picnics), so as I said I'm too lazy to find someone to pay with DP, but do feel quite strongly that a 16 y/o shouldn't always be with his parents.

 

Having spoken with my friend she said it took seven months for her support to start, so it looks as though I have stacks of time to think about this and get something lined up. I'm definitely not going to do the overnights.

 

Nowt like that here lol I noticed it said "Some children may be unsuitable." Knowing our luck mine won't be. He won't do anything with groups, even small ones, so it has to be a one on one thing. They have tried sport/music and everything he just does NOT want to know. At present wherever you take him he will not join in with anything. We have totally exhausted all current options... I wouldn't mind him doing his own thing, but that 'thing' is nothing but aimless running around and flapping. If they make that an inclusive 'sport' we are onto a winner....

[Lynden]

School clubs ? it is clear some areas are spoilt for options and others with none at all. Our school is 40 miles away hardly practical even IF they operated a club which they don't.

 

I have to say our area isn't too bad in terms of support, I guess others living here may say differently. I know many of the families that are in our school (SLD school) get direct payment/respite of some description. We did move to the area three years ago and have no family support at all and I think that goes in our favour.

 

His school is fantastic though, I cannot praise them enough. They really try their damnest to provide extended schools facilities for our children. The afterschool club runs once per week term time and they do three weeks holiday club in the summer, staffed by school staff (I only send him 2 days per week for 2 weeks). It is part subsidised by the LA but that money disappears next year, so it will be up to our Friends of Association to try and help fund it from then on. Whether we will be able to or not I don't know, but I do know our family services coordinator works her bum off to be able to put all this in place.

 

Lynne